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It's all trial and error, isn't it?

social care

If you haven’t already, I strongly suggest you trot over to the iPlayer and watch a BBC Three drama called Don’t Take My Baby.

It is based on the true story of a disabled couple and their fight to keep their first baby. She has a muscle wasting condition and he has a degenerative visual impairment.

As much as some parts of the drama were probably not exactly as they happened, and I do think a lot was over dramatised, a lot of it also rings true for so many disabled parents. It was a little too close for comfort at times and I’d be lying if I said that it didn’t upset me. It did. I felt angry and hurt and ashamed and tired that this kind of treatment of people with disabilities still happens today.

The beginning of the programme shows the couple as they go into hospital to have their baby, not knowing whether the mum, Anna, would even survive the caesarian section under general anaesthetic. They are scared, anxious, excited and apprehensive. The feelings that I’m pretty sure EVERY new parent goes through when they are about to give birth. However, unlike other couples, this couple then leave hospital and go home without their baby. Whether this actually happened in the real family’s case I’m not sure. I think social workers would have lost their jobs by making a decision to disallow a couple the custody of their baby after birth, and on the spot in that way, when their presumed incapabilities were just that, presumed. But as far as the story goes, they are given no chance to show whether they can look after their own child and are instead given daily ‘visitation’ rights under supervision at the hospital.

For those who know me and who have watched this programme, you might agree that my physical capabilities as a parent are similar to those depicted and shown by the actor/mum (FYI, the actor has the disability. She is not an able-bodied actor playing a part of a disabled person) and to see this interpretation of what social workers do to the first stage of motherhood and of parenthood, is frustratingly accurate at times.

When we knew we were going to have our first child, I contacted adult social care well ahead of time, to ask for more help from a PA for when my baby was here so that I could carry out my role as mum, especially when my partner was at work. I was told that nothing could be done and no assessment would be made until after the baby was born. Because that seems so logical, right?! (We were later informed that this was in fact the wrong way to do things, and that it would have made the process smoother had the funding arrangements been put in place before Amélie was born. Duh.)

But as it happens, it didn’t happen the right way round. They didn’t listen. Because how could I possibly be a good judge of my own abilities and difficulties?

So. Not. Sensible.

Not sensible and not in the least bit enjoyable having possibly the most unsympathetic and unemotional social worker I’ve had the delight to come across, sat in your living room while you and your baby are covered in equal quantities of breast milk, telling you that children’s services should be involved to ensure that there is no risk to your baby. To pass the buck of a costly disabled parent to another service, another service controlled by the local government, where I’m sure at the end of the day. the money all comes from.

When it came to my recent reassessment earlier this year, my partner, fuelled by the same frustration and anxieties as me, came across a document titled ‘They Said What?’ By Jenny Morris, with the help of the Disabled Parents Network. I hadn’t realised someone who didn’t know me had written a book detailing exactly the same silly things we’ve heard from social workers….

… Okay but joking aside, it was uncanny. And hilarious; how could the same mistakes and misconceptions be happening all over our country!? Please read it.

Disabled parents are difficult people. An awkward bunch with no regard for sticking to the comfortable norm. But through no fault of their own. Not one agency or service will take responsibility for their care and so cases rarely get resolved and knowledge and experience is never shared. So the next case of a physically disabled mum (or dad, or both) due to have a baby, will be forwarded to social care services to be met with a response similar to – “oh I’m not sure about this. Janet, do you know who deals with this type?” In which case Janet will say something along the lines of “No, Beverley, beats me. Cc Children’s Services in to an email, they might know. I didn’t realise disabled people could even have babies.”

But this isn’t good enough. And we know it’s not good enough because of programmes like Don’t Take My Baby. And there will be people all over the country and possibly further who watch this and think that surely this doesn’t happen. But it does.

Luckily for me and my partner, it wasn’t discussed whether we’d get to keep our beautiful girl or see her go into foster care. I can’t think of much that would be more harrowing. Luckily for us my partner is able-bodied, but the threat of children’s services looking into safeguarding concerns was hideous and petrifying. I knew my baby was safe in our house, so why would anyone think she wasn’t? In reality, I personally don’t think there was ever an official concern about Amélie’s welfare. Midwives, health visitors and occupational therapists were collectively not concerned. The only concern was the cost of funding the extra PA hours to the adult social care section. They were safeguarding their own money and wanting someone else to pay for it.

My experience more often than not has shown me that it is a game of tick boxes and money moving than truly about the welfare and needs of the individuals that social services exists to help in the first place.

The battle is ongoing and probably will be until my children have grown up and left home. I will never be able to parent my own children without being reminded of my cost to the state, and maybe I should. I battle with myself over whether it is fair for me to have children and whether taxpayers are happy to help fund someone to help me.

To follow on from my previous blog post regarding the state of my ‘personal and social care needs’ (wait, I think I just vomited in my mouth), I thought I’d update you all on the still-going-on situation.

After having to nitpick my way at an excruciatingly slow pace through 5 ‘average’ days in order for the panel (seriously it’s like X Factor only slightly more entertaining) to see what exactly I use my PA to help with, I sent the completed sheets back to the social worker. She sent them back. With revisions. Revisions which to the person suggesting them seemed completely fair and reasonable. But the revisions would leave me with crucial gaps where I need help to get things done on the days I don’t work and also on the days I do work.

One particular amendment would have meant that I wouldn’t be able to take my youngest daughter to a playgroup because, surely I don’t need help for every moment of being there. But what toddler do you know who adheres to a timetable of bowel movements or snack requirements? I need physical help to care for my children, they know that. So therefore it is a case of ‘which part of your parenting role is less important?’ Taking your children out to meet other kids and play, or be at home to make sure there are clean clothes to dress them in.

Fast forward a few weeks and the S-Factor judging panel want to know if they could casually chat to my employer about what help my PA provides me at work. And ask them why they can’t just pay for that help. Because surely they can hire someone else completely different just to help me tidy up and lift heavy boxes when other more capable staff do it for themselves? Yes that makes total sense and I have absolutely no reason to think that this intervention would at all make me feel like a burden on my workplace, to stick out more than I already do. Even if this part of the job role was carried out by my existing, perfectly good PA, why should the employer be asked to spend more on having me work for them when I come with this added extra cost? In what universe would it be favourable that they continue to employ me with my plus-one who they also have to pay, when they could just employ someone else, just like my other colleagues, who can complete all of the job responsibilities by themselves?

Wow. I’m seriously wondering if I should even work there myself. I am clearly not a capable person! Maybe I’m beginning to see what the Social Care team are gesturing at. I get it now..

..I shouldn’t have a job. By putting my degree, postgraduate and knowledge of children’s development to good use, for a charity who just want to improve outcomes for young children and families, something I care a great deal about, I am simply putting an extra strain on the economy, the welfare state, the local care trust and maybe eventually my employer?

My life has recently been put into a list. Broken down into a series of trivial activities which are apparently all that I am. They are assigned a figure signifying how much of each item I am entitled to do.

I didn’t ask for the list. It was given to me and maybe I should just be grateful and move on.

I asked for some help, and if you know me personally, you will know this alone is difficult enough for someone as stubborn as I. But I asked for help from the local care trust, to provide support to allow me to be as independent as I can. To not have to rely on my family and my partner to do things for me when they have their own lives to live day-to-day. My partner needs to have a full time job in order for us to afford our own home, and to raise our kids in the way we want, with the income we have. Ideally he wouldn’t have to work, and he’d be around to help me to the things I can’t do. He regularly does these things throughout the week, but he can’t work and help me at the same time. He is only one man! He needs his own independence too, I can be quite annoying.

Of course, ideally we’d be bazillionaires, own a massive house with everything we want and need and not need to work, and enjoy doing jobs and making things better for others. We’d have a pool outside with sun loungers and a cinema in the basement with huge reclining chairs. We’d have an enormous shiny kitchen with an island in the middle and a giant oven and hob with 12 gas burners. We’d go and visit other countries and take our girls to see the world. Don’t say that’s not your dream as well because we both know it is. Nobody wants to earn just enough to get by, to co-own your house with a bank, knowing you’ll be paying back so much more than your house is worth. Groaning at the price of diesel at the fuel pumps, dreading the letters from BT to say they’ve increased line-rental prices by £2.30 more per month, to have to receive help from the state to pay for someone to take you for a wee at work. You know, the things everyone worries about. But sometimes things are necessary and for certain things we need to ask for help.

Luckily there is a welfare state in the country I live in and for that I know I am grateful. What other people in less developed countries are lacking due to their country’s wealth or their government is sad. And I am grateful for what we have.

I will always be grateful for what I am given and it is important for me that whoever is reading this understands that. But right now I am struggling to respect the behaviour and attitudes of those in the power to give. I am sorry that I want to scream in the faces of those people who are in a position to give me the means to the support I need, scream at them that they don’t get it. They just don’t get it.

I am a mum. A disabled mum. A disabled mum whose two girls live with her at home because that is where they should be. So when the person who ticks the boxes on the oh-so-important paperwork suggests an amount in the proposed budget, assigned for ‘childcare’, please, tell me how I am supposed to feel. Because for over FOUR years, we have been explaining to those in the adult social care section of the local care trust that WE ARE NOT ASKING TO USE A PA FOR CHILDCARE. They argued with us before and after Amélie was born in 2011, with us explaining the help and support is for ME. If MY needs are taken care of, from personal care, to helping me do the weekly food shop, and helping me carry out my role as a mum, (FYI, this falls under Adult Support services) then there are no concerns about my children. They tried to suggest that Children’s Services needed to be involved. We disagreed, as did the Health Visitor and my Occupational Therapist. Why should we be subject to being analysed by the same people who investigate abuse or lack of parenting skills, when there’s never been a concern about my kid’s welfare? Because, they were trying to get out of providing help for a disabled parent by claiming my child was ‘at risk’ if I couldn’t look after them by myself. If they ignored part of the ‘problem’ that was my needs, maybe it would go away. Passed on to someone else with a slightly different form of paperwork. That was a fun time. It’s always nice being told you’re a risk to your own baby.

We pay a lot of money for our children to go to nursery when we work, that’s childcare. When I look after my children, that’s simply me being a parent. At what point have I ever asked for them to pay for someone to come in and care for my children while I sit there and have a mani-pedi?

Anyway, back to the recent reassessment. Do you know how many hours were suggested I could or might use for ‘childcare’ (it’s not for CHILDCARE) out of the weekly amount?

Three.

Three hours is what this lady assigned for my role as a parent. As a mum. Three hours in a week. Of course this doesn’t mean I can only get my PA to do three hours a week of helping me take care of my own kids. It’s a figure that this person so kindly broke down theoretically into areas of the help I need, in case I can’t work that out for myself. I ask my PA to work at certain times (usually just weekdays while my partner works full time) that I know I need help and a large part of that is to help me carry out the physical aspects of my role as a mum. Of course she does more than three hours of that. Which young children only need things doing for them for three hours a week? I guess I could only feed them breakfast on certain days, dinner on different days, send them out in their PJs a few times a week, that would save time.

Two hours a week she guessed as what I might use for ‘socialisation’. Bloody hell. What am I? A puppy? A prisoner being allowed outside with the other delinquents for a couple of hours each week, to get some fresh air in my lungs? What crime did I commit?

I promise I am not, and have never asked for anything I don’t think I need. I understand completely that this country is a little tits-up when it comes to budgeting and controlling its spending. But I am not asking for more than I need. So why does my life have to be broken down into time and money every year in such an intensive yet careless manner? I am fully aware of the burden I place on the state. I see how much I cost them. Written down on paper just to rub it in. You know that shitty feeling you get in your belly when you know something bad is going to happen, like when you go into a chemistry exam knowing you did precisely 7 minutes of revision for? That feeling stays with me. It comes back to rear its ugly head quite often but it never properly goes away.

So my last response via email a few days ago was reiterating yet again about the need to cover the physical help I need as a disabled mum, and I have yet to hear back about a more final figure they’ll allow me. Final. Ha. Of course I don’t mean final you silly goose! Until they decide to do this all over again. And again. And again. There’s no continuity of care, we can’t get it sorted and get on with our lives feeling assured. My condition isn’t going to improve, It only gets worse, so it’s like we have a general election in our lives every year, where our way of life may change in a heartbeat down to the opinion of whomever happens to get our case that year.

In a particularly sad and depressing end to such a positive blog post, all of this makes me sometimes feel guilty for having my own children. For being a costly member of society because I selfishly wanted to reproduce knowing fully that there would be many things I’d need someone else to do for me.

Of course, I don’t regret my children for a second. They’re a little annoying at times, waking us up in the night, puking on my face, and demanding to be fed several times a week, so selfish. But between the two of us we somehow managed to spawn some pretty cute and hilarious small people. I guess they can stay.